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Social Media Helps One Man Institutionalized for Schizophrenia Reconnect with Old Friends

March 20, 2012

Neil Barber

The summer before Neil Barber’s junior year in high school, he and three of his buddies decided to experiment with marijuana. Neil’s dad, Greg, recalls the four of them getting “pretty rocked,” but Neil being the only one unable to recover. “Perhaps the marijuana was laced with something,” Greg wonders. “But I also believe the drug may have been a catalyst to my son’s mental illness.” Up to that point, Neil was a popular, outgoing, gifted athlete with a bright future in Division 1 Lacrosse. But that October, Greg noticed startling red flags in Neil’s behavior: “He suddenly became a loner, lost all his confidence as an athlete, and couldn’t focus or concentrate.”

Neil’s parent's took him to a psychiatrist, where he was misdiagnosed with depression. The doctor prescribed Prozac, which he took for about 2 years without improvement. In October of his freshman year of college, Neil suffered his second psychotic break, and began hearing voices and suffering extreme paranoia.

Neil was later diagnosed with schizophrenia and for over 22 years he has fought it valiantly. Until he was 16, Neil was every parents dream. He was a kind, sensitive, funny, spirited son who was a devil and a truly gifted athlete. He excelled in every sport he ever tried. Greg admits that he was in denial about Neil’s final diagnosis, "I didn’t want to admit to myself that Neil was mentally ill." Neil’s life with mental illness has caused isolation, loss of confidence, and loss of Community, ie: loss of his friends.

Happily, the story took a bright turn in 2009, when Greg ran into Neil’s high school lacrosse coach, Bob Rule, at a lacrosse reunion. When Greg told Bob what had became of his son, Bob decided to visit Neil at the hospital. “I was amazed and elated,” said Greg, “that Bob wanted to visit Neil. Bob said to Neil, ‘You are a respected member of the lacrosse community, and we will never forget you.” Bob started telling his middle school students about Neil, and how courageous he is in battling his disorder, and the kids were very inspired. “For 10 years,” Greg explains, “Neil only had 4 visitors. Suddenly, 250 kids wanted to reach out and help.” Greg suggested the kids donate food to homeless shelters and raise money for brain research. That’s when Neil’s Wheels NY was born. “I chose to donate the money raised to the Brain & Behavior Research Foundation because,” says Greg, “the only way Neil will get better is for somebody to find a cure for him.” Neil’s Wheels NY has taken off, and more than $5000 has already gone toward funding NARSAD Grants. Recently, the NY Islanders even hosted their own Neil’s Wheels event! Greg has also found a way to give back to other families: he speaks to and educates the students about mental illness. He tells them that their “gift to my son is the collective donation. My gift to you is to tell you about mental illness and encourage you to not keep mental illness a secret.”

Neil’s isolation was also about to take a turn for the better. In 2009, Greg logged onto Facebook and began reconnecting with some of his son’s high school chums. The connections grew, and Neil was suddenly reunited online with 120 old friends. Greg brings his laptop to the hospital and helps Neil post replies and messages. Greg explains: “The computer has been a minor miracle to my son emotionally and mentally. In the hospital, he has little socialization. But online, he has reconnected with everybody, and some of his old buddies have come to visit. It’s changed his life – he can communicate with the outside world again.” Greg continues, “The computer has also helped him focus and concentrate. He is now able to talk to me for almost an hour, as opposed to a couple of minutes.”

Greg tells the students and families he speaks to that “there are success stories” out there, and “not everybody with mental illness wants to do awful things [as the media suggests]. Many people with mental illness go to Ivy League colleges, have successful careers, and live full, productive lives.”

For the first time in a long time, Greg can look to the future with hope: “Three years ago, if you asked me what I thought about Neil, I’d say he’s just marking his time in the institution till he dies. But now, I can say God had a different purpose for me and my son. We are making a difference to so many families. I feel pretty good about it.”

As a new NAMI Family to Family co-teacher, I am so grateful that you wrote this intensely personal account of positive things that have happened to Neil. The Caregivers of loved ones with mental illness which I help teach need to hear these positives especially when they perceive like you once did that there is no future for their loved one with mental illness. We must all speak out and let the world know that mental illness is not a crime or prison sentence but an illness like diabetes or high blood pressure. You can't see the injury or miswiring of the brain of someone with mental illness. They deserve our love and respect.

As a late-onset schizophrenic, I am scared, lonely, and very frustrated. I have two degrees, chemical engineering and biological sciences, have had significant success, earned three Vice-president's awards, optimized a pharmaceutical process, etc. Now, I cannot work or hold employment.

I hate loneliness and have been disowned by family because I told them the statistical likelihood, 3-4%, of my nieces and nephews potentially developing schizophrenia. Personally, I have been diagnosed with schizoaffective and I am have severe suicidal ideation. The latter is proven by the included reference. I came very close to completing suicide on a couple different occasions. I do not want my nieces and nephews to experience the same.

The life of a schizoaffective disorder person; schizophrenic; and, I assume, other mental illness disorders is very difficult. Loneliness is horrible. With that said, I would like to provide the following quote and journal article:

"The fall from grace is steep and swift, and when you land, it does not make a sound, because you are alone."- A poem by Carl Williams, 1995

In truth, many did not expect me to earn a degree in chemical engineering or biological sciences. They definitely did not expect my other successes in industry. As such, some old acquaintances have been quite rude. Also, old friends have literally told me they liked me the "old way" and "we do not know you any more!". These diseases/disorders destroy people. I cried when I read about the number of visitors. I have experienced similar. I have not had a visitor to my apartment since 1999.

I am moved and saddened by your story, Chris. Your quote by Carl Williams hits very close to home, as does your story. While I suffer from PTSD and late-onset OCD and Borderline Personality Disorder, my life has been consumed with failed attempts at employment, loneliness, shame and invalidation. I also have no family to turn to and have been dropped by my "friends."

Given that my symptoms didn't show up until later in my life, like you, I was able to surprise a fair amount of people with what I was able to achieve. Even though I am feeling unwavering despair, I have to remind myself that others were successfully treated and not give up. I know it's hard...

Dear Chris,
your story is one of courage....thank you. People around you do not understand.... the course of your journey can be scary and confusing for people to follow, they may believe you are rude or arrogant, not realizing your desire to be successful and trying to cope...you may need someone to advocate and explain to your old friends or family, or perhaps you can do that too....don't give up hope...you go ahead and be your best advocate.....sincerely.

my 22 year old son has antisocial disorder and schizotypical tendencies. He refuses to go to doctors and take medications. We cannot get him help as he has been dropped from our insurance due to his age. Medicaid has turned him down and we are currently fighting with SSI, which isn't going too good due to his lack of doctors appointments. I don't know what to do, someone please help me.
My email is cmercer34@hotmail.com

I finally am seeing your piece on my son, Neil Barber. he is so much better with being able to communicate with his old friends. Facebook which has a lot of negatives, in this case, is awesome. His friends can choose when to respond and Neil might call too much, etc. Neil is happy to see his friend's pictures in the facebook responses. Thanks BBRF. See our site. www.neilswheelsny.com

hi i am Bagus Utomo from Indonesia. my brother recovered very well after about 17 years suffering schizophrenia. i start a facebook group for families in 2009, now we have more than 5300 members all over accross Indonesia.

Indonesia is an archipelago with about 17.000 islands. You can imagine how difficult it is for families to get proper health support, even for just information about mental illness. Indonesia only have about 600 psychiatrist for 250 million people!

social media is really a miracle for us. families are now accessing our facebook group with cellphone! so don't give up hope. we also struggle hard enough in Indonesia! Spirit!

Dear Neil, Greg and your family, and to whom this concerns,
We are sharing a similar journey with our son, unlike yourselves we do not know if the trigger was cannabis. What we do know is our son had his first apparent psychosis at 17 years of age, yet their were aspects of the illness prior to that we had not identified, yet we suspected that not all was well including our son, but no medical professional who saw him were able to diagnosis hi correctly in time;like Neil he was affable, sensitive, intelligent, curious, allot of empathy for others, social and wanted to achieve his dreams. All of these qualities are gone replaced by negative symptoms after five years of battling the illness with medication and the positive symptoms; now he is back in hospital once again, depressed and suicidal-who wouldn't be. Isolation is the worst aspect of this illness, he has no contact with previous friends (they have moved on), he cannot pursue a life he dreamed of, because he cannot cope with stress or any form of challenges, new routines or demands.He has chosen to withdraw into a recluse mind-set or forced to by the illness and circumstances. We think people like our son and yours, others who are also acute, need specific environments where they can get assistant living-accommodation with a program that stimulates them with out stress (activities-maintain brain neurons), rebuilt their confidence, be surrounded by people (medical staff who have an understanding of this illness) and visitors. Since this mental illness is a life-time and often disables the person preventing them to support themselves or live independently and leaving most family members to feel overwhelmed psychologically and financially that is where the government should step in for alleviating the situation for families as no medical insurance is going be affordable or even cover an individual with life-time illness that disable them so much. Then maybe we would not see so many mentally ill living a rough life on the street once family is not here for them.....society abandoning them to their hard fate when they are not really responsible for their illness......that is social a battle of human rights and dignity worth fighting for by all this affected by this illness it is its most acute form! It is a humanitarian issue. And it is not cost issue, as we spend billions on military and space, what happens to human beings and the earth?

Wait, your son is in the hospital? How on earth did you get that to happen? We here in California have an extreme shortage of hospital beds for our loved ones with brain disorders. They mostly end up in jail.

In hospital more than once, a revolving door patient typical of mental illness; two occasions as involuntary admission and several times as voluntary admission, but mostly our son chose to be treated and willingly goes to see his medical team; however he always wants to come home of course after his treatment and after his chronic episodes of psychosis have subsided (paranoia).....an indeed our local hospital due to lack of beds often cut short his stay and in other occasions our son would request to return to his home and family; we always wanted him back but unfortunately during a psychosis-episode and probably in his despair.He succeeded in fatally self-harming in April 2014-just 24 years old.

Connect with others – don’t be alone anymore-find a NAMI Peer to Peer Group in your area by calling 1-800-950-6264. Schizophrenia Anonymous Conference Call Support Groups for Family and Friends SARDAA- Schizophrenia and Related Disorders Alliance of America-For more information call toll free number 800-493-2094

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